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Friday, September 19, 2014

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Baking matzah cheers four-year-old facing illness

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Jayden Roll and her brother, Joshua, help Rabbi Dovid Weinbaum put matzah into the oven at a model bakery at the Y.

MONTREAL — “Mom, I had fun. Rolling the matzah dough was my favourite!”

Four-year-old Jayden Roll beamed up at her mother in the lobby of the YM-YWHA in Snowdon. In many ways, she was just like the 5,000 other toddlers and children who ground wheat, rolled dough and baked matzah at the Living Legacy Model Matzah Bakery, a Chabad project.

But she is also very different. Sometimes she is just too tired and weak to do any activities at all. The doctors think she also has only a short time left until she will need to remain in the hospital for an extended period of time.

Jayden has pre-leukemia, known as MDS (myelodysplastic syndrome), which is very rare in children. Her doctors predict that it will most likely progress into acute myelogenos leukemia, or AML, at which point she will need to undergo chemotherapy and, ultimately, depend on a marrow transplant to survive, said Rabbi Menachem Posner, a friend of the family.

Just a month ago, Jayden, a bouncy little girl with blond hair and an easy smile, was enrolled in Jewish People’s and Peretz Schools, which she attended together with her younger brother, Joshua.

A bright student, she was eagerly looking forward to learning about Passover. When she began complaining about aches in her legs and displaying extreme weakness and lethargy, her mother, Kelly Goodman, took her to the doctor. After things got worse and Jayden began falling asleep all the time, a blood test confirmed that she was suffering from a form of pre-leukemia so rare that the Montreal Children’s Hospital had never treated it before.

“The Roll family’s life turned upside down,” Rabbi Posner said. “Jayden has been going twice weekly for blood tests and has already had two blood transfusions, which explains why she looks and acts exactly like a healthy little girl – at least some of the time.”

In order to avoid infection, she stopped going to school and her parents rarely take her out, even grocery shopping. Her mother has quit her job to be able to care for her daughter.

“Since she is not in school, and Passover is probably going to be the last holiday that she will celebrate before she goes to the hospital, I have been trying to teach her as much as I can at home,” Goodman said. “But the other day, we dropped off Josh at school and she saw the other kids going to the model matzah bakery at the Y. She so wanted to join them, and we were torn. At first I considered joining the school group, but my husband, Warren, reminded me how careful we needed to be.”

Goodman contacted Aviva Miller at the Y, and Rabbi Dovid Weinbaum, program director of Living Legacy, which operates the model matzah bakery, offered to hold a private show just for Jayden, Josh and a few family members.

According to Marlene Jennings, the Y’s executive director, “When Rabbi Dovid came to me with his request, I thought, ‘This is exactly what the Y is all about. We have to make sure that no one at all is left out.’”

Rabbi Weinbaum said that getting a hug from Jayden and hearing how much she loved the experience is what his work at the Living Legacy is all about. “We are here to make sure that every child can experience the beauty of Judaism, no matter the situation.”

Goodman is realistic about what the future holds. “We just found out this week that neither of her brothers are a match for her, so we are starting to look for a donor.”

The Rolls are also co-ordinating a marrow drive for their daughter through Facebook at http://www.facebook.com/cureforjayden.

And while a full marrow donation drive is not yet in place, the parents encourage everyone to contact Héma-Québec and sign up as potential donors.

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